Hope comes at a steep price

Medicare 'Doughnut Hole' hinders local woman battling cancer

For months and months after the Twin Towers fell, Sally Dorritie of Warwick did what anyone would do: Wash the clothing of her then-husband, an FDNY captain who was at Ground Zero from Day 1, digging and digging through the toxic ruins.

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By Deborah J. Botti

recordonline.com

By Deborah J. Botti

Posted Apr. 16, 2013 at 2:00 AM

By Deborah J. Botti

Posted Apr. 16, 2013 at 2:00 AM

FOR MORE INFORMATION

On the doughnut hole: doughnuthole.aarp.org

On co-payment assistance: cancercarecopay.org - and visit the website of the drug's manufacturer

On victims' compensation: vcf.gov

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FOR MORE INFORMATION

On the doughnut hole: doughnuthole.aarp.org

On co-payment assistance: cancercarecopay.org - and visit the website of the drug's manufacturer

On victims' compensation: vcf.gov

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For months and months after the Twin Towers fell, Sally Dorritie of Warwick did what anyone would do: Wash the clothing of her then-husband, an FDNY captain, who was at Ground Zero from Day 1, digging and digging through the toxic ruins.

“I never suspected …,” she says – nor did she consider the possibility that her profuse sweating late in 2012 was linked to a serious condition. “Just taking out the garbage, I'd have to take my shirt off when I got back inside.”

Her doctor did some initial testing and then referred her to Dr. John F. Ferguson, a pulmonologist with Middletown Medical P.C.

“I had also been short of breath recently. I just moved into a new 55-plus apartment building, but taking a few steps … It was a freaky thing,” she says.

Dorritie was thinking something bronchial – maybe even tuberculosis. Ferguson did a few more tests.

“When I came back (for the results), I saw it in his face. 'Sally, you have lung cancer.' I almost fell off the exam table,” says Dorritie, who's never smoked a day in her life – although her parents did. She also has emphysema.

“We talked about our Staten Island roots,” says Ferguson … and she readily agreed to see a thoracic surgeon, Dr. Prasad Adusumilli, at Memorial Sloan Kettering Cancer Center. All initial testing indicated a stage 1, at worst, stage 2, adenocarcinoma, a form of non-small cell lung cancer – most commonly found in women and often in nonsmokers.

Adusumilli scheduled surgery for March 1. “But it didn't go the way it was supposed to,” Dorritie says.

The plan was to remove the first lobe of the lung – but Adusumilli found the cancer had metastasized to the pleura and lymph nodes in the second and third lobes – and was inoperable.

“He told me he would do harm if he opened me up more, so he wanted to close as soon as possible,” Dorritie says, again recalling the pain in another physician's eyes.

A silver lining

The good news, though, was that she was found to have mutation EGFR (epidermal growth factor receptive), which makes her a candidate for a chemotherapy drug called Tarceva.

“Tarceva targets a genetic mutation specifically found in her cancer that shuts down the specific protein those cancer cells need,” says Dr. G. Varuni Kondagunta, an oncologist with Crystal Run Healthcare.

Ferguson and Kondagunta agree that the dust at Ground Zero, which included asbestos among other toxins, is responsible for illness in many first responders – and potentially for those exposed in a second-hand nature, such as with Dorritie, who handled contaminated clothing for months.

They also agree that it's not over yet for the mid-Hudson. “There's a strong likelihood that this is a contributing cause,” says Ferguson, “especially because she's so emphatic about never having smoked.”

Ferguson has already treated a couple of hundred local first-responders for everything from asthma to interstitial lung disease to cancer. He says he is also aware of the potential consequences of bringing into the home contaminated clothing, such as in Dorritie's case. He references an employee of Johns-Mansville, an insulation manufacturer that spent decades in asbestos death-related litigation. The employee returned home daily wearing clothes covered in asbestos fibers. Ultimately, not only the employee, but his wife and two daughters, succumbed to the effects of asbestos exposure.

While at Memorial Sloan Kettering and in Orange County at Crystal Run since 2009, Kondagunta, too, has treated a host of cancers linked to 9/11.

“There is a list of associated malignancies … as well as emerging data,” she says.

Overwhelmed with frustration

For some – particularly women who have never smoked and have this genetic mutation –

Tarceva can potentially add years to their lives.

But it comes with a cost of almost $6,000 a month.

Recently, Dorritie, 58, described as stoic through her battle, was overwhelmed with frustration.

She drove a school bus for 25 years, but because of a disability, is now living on a fixed income and is covered by Medicare. She pays monthly for supplemental coverage as well as a prescription plan.

So why was a $3,000 co-pay required for the month's supply of Tarceva – money she does not have access to?

She's in the Medicare Part D “Doughnut Hole.”

Envision a doughnut on a plate. Its left side represents the Medicare Part D prescription coverage. When the total of what the consumer and insurance carrier pay for drugs reaches $2,970, then you move into the hole, where, in 2013, the consumer will get a 50 percent discount on brand-name drugs and a 14 percent discount on generics, says Robert F. Quinlan, owner of Quinlan Care LLC of New Windsor, an independent insurance agent/broker since 1986 whose focus is now on Medicare and long-term care insurances.

When out-of-pocket drug costs reach $4,750, then you're on the other side of the doughnut – or under catastrophic coverage, where your responsibility is 5 percent. Each year, a new doughnut will be served in a slightly different size, as the doughnut hole is slated to disappear in 2020.

Generosity of loved ones

Thanks to the generosity of family members, which she hopes to repay, Dorritie was pulled through the doughnut hole and began treatment about a week-and-a-half ago. She has applied for assistance through the nonprofit CancerCare Co-Payment Assistance Foundation, but her application is still pending.

“She will be on Tarceva for as long as it's working and she tolerates it,” says Kondagunta, who has used this drug in about 50 cases. “It's a very well-tolerated oral medication. The main side effect is a rash, which actually helps predict response.”

Dorritie has a rash.

'I still have a lot of living to do'

But this also means that Dorritie will potentially continue to face these financial challenges.

“I want to see some grandchildren,” she says. “I still have a lot of living to do.”

Kondagunta says studies indicate progression-free survival of an average of 15-20 months, which is more than double as compared to traditional chemotherapy.

“And we all have our stories,” says Kondagunta, referring to a female patient on Tarceva for four years. “People don't get sick (on this drug.)”

“I've seen wonderful success,” says Ferguson, who's used Tarceva with about 20 patients, one of whom was on Tarceva for almost 10 years.

But why are these life-saving medications so expensive?

Kondagunta is treating a patient with another targeted drug, Yervoy, that costs $20,000 every three weeks.

“Many drugs in oncology cost a lot of money,” she says. “It's a frustrating, heart-breaking problem.”

It's a very long process from lab to bedside. Using Tarceva as an example, a scientist has to first identify this cancer's gene mutation in nonsmoking females. Then the appropriate drug must be researched, developed, tested in clinical trials before it is available for use, says Kondagunta – and its use is limited to patients who meet very specific criteria.

Also, oral medications go through the insurance companies' prescription plans while intravenous medications fall under different coverage, she says.

“Medical care in this country is abysmally controlled. It is driven by the dollar and that's it. No money, no drugs,” says Scott Berliner, a pharmacist and owner of Life Science Pharmacy in Harriman. “It is a political statement because the companies making the money are the companies driving the political machines. I do not see an end to this. With all the technology and great drugs, we are not the top, medically advanced country in the world. France, Italy, Israel and Japan are quickly surpassing us.”